An Outcomes Strategy for COPD and Asthma: NHS Companion Document

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1 An Outcomes Strategy for COPD and Asthma: NHS Companion Document 1

2 DH INFORMATION READER BOX Policy Clinical Estates HR / Workforce Commissioner Development IM & T Management Provider Development Finance Planning / Performance Improvement and Efficiency Social Care / Partnership Working Document Purpose Gateway Reference Title Author Publication Date May 2012 Target Audience Best Practice Guidance An Outcomes Strategy for COPD and Asthma: NHS Companion Document Department of Health / Medical Directorate / Respiratory Team PCT Cluster CEs, NHS Trust CEs, SHA Cluster CEs, Care Trust CEs, Foundation Trust CEs, Medical Directors, Directors of PH, Directors of Nursing, Local Authority CEs, Directors of Adult SSs, PCT Cluster Chairs, NHS Trust Board Chairs, Special HA CEs, Directors of HR, Directors of Finance, Allied Health Professionals, GPs, Communications Leads, Emergency Care Leads Circulation List Voluntary Organisations/NDPBs, Professional bodies Description The NHS Companion Document to the Outcomes Strategy for COPD and Asthma sets out best practice for the NHS to achieve the relevant objectives from the Outcomes Strategy. Cross Ref Superseded Docs Action Required Timing Contact Details An Outcomes Strategy for COPD and Asthma N/A N/A N/A Kevin Holton Respiratory Team Room 415 Wellington House Waterloo Road London SE1 8UG For Recipient's Use 2

3 You may re-use the text of this document (not including logos) free of charge in any format or medium, under the terms of the Open Government Licence. To view this licence, visit Crown copyright 2012 First published May 2012 Published to DH website, in electronic PDF format only. 3

4 An Outcomes Strategy for COPD and Asthma: NHS Companion Document 4

5 Contents Foreword... 6 Preface... 7 Introduction Chapter 1: REACT a call to action Chapter 2: Improving quality and outcomes for people with COPD Chapter 3: Improving quality and outcomes for people with asthma Chapter 4: Links with Public Health and Social Care Chapter 5: Levers for change Chapter 6: Implementation support Annex A - NICE Quality Standard for COPD Annex B - Key similarities and differences between COPD and asthma Annex C - Summary of actions and interventions outlined in the NHS Companion Document 96 References

6 Foreword We are in the final year of transition to the new commissioning and management system for the NHS. It is vital that in this year we continue to uphold the highest standards of care and quality and take bold, long-term measures to secure sustainable change. The case for taking action to improve outcomes for Chronic Obstructive Pulmonary Disease (COPD) and asthma is clear. Premature mortality from COPD in the UK was almost twice as high as the European average and premature mortality for asthma was over 1.5 times higher. Around 90% of deaths from asthma each year could have been prevented. And of the estimated three million people living with COPD in England, only 900,000 have received a clear and accurate diagnosis and are getting appropriate treatment to improve their quality of life and clinical outcomes. We need to change our approach to COPD from one that is reactive and waits until people have severe symptoms - which costs more for the NHS and results in poorer outcomes for individuals - to one which is proactive, preventing disease, diagnosing earlier and treating and managing the condition from its early stages. In asthma, we can work harder to prevent people unnecessarily dying each year, and support people to reach the ultimate and achievable goal of freedom from their symptoms. The Outcomes Strategy for COPD and Asthma was published in July last year. It set out the high-level vision for all parts of the system - the NHS, public health, social care, other national and local government departments, and the private and voluntary sectors - for achieving this change in approach. To support the NHS as we transition to the new NHS architecture I am now publishing this NHS Companion Document, which sets out best practice to achieve improved outcomes for COPD and asthma. The NHS will be judged on its performance in reducing deaths from respiratory disease through the NHS Outcomes Framework. This Companion Document provides support and guidance to the NHS to achieve fewer deaths year on year. I want to see the NHS rival any healthcare system in the world for its quality and outcomes for COPD and asthma. We can save money, reduce deaths and improve the quality of life of those with COPD and asthma by changing our approach and by working with people with COPD and asthma as equal partners in their care. Sir David Nicholson Chief Executive Designate NHS Commissioning Board 6

7 Preface The Outcomes Strategy for COPD and Asthma showed the Government s commitment to improving services for people with respiratory disease, as well as providing high-quality care that is safe, effective and responsive to the needs of individuals in streamlined services delivered closer to home. This NHS Companion Document is a key part of the suite of tools and resources planned to help support different parts of the system implement the Outcomes Strategy. The NHS will be working towards improving outcomes across all five domain of the NHS Outcomes Framework. This Companion Document work through each of the five domains, detailing the actions and interventions the NHS can take to make improvements in outcomes for those conditions. We would like to thank everybody who has been involved in developing the Outcomes Strategy for COPD and Asthma and the NHS Companion Document. In particular, we would like to thank the British Lung Foundation and Asthma UK who represent patient s interests so effectively and also the many healthcare professionals and their representative bodies who have given their time and expertise freely and willingly. Meeting the challenge set out in the Outcomes Strategy for COPD and Asthma will require all those working in the NHS to break down barriers and be true partners in care. Success will require joint planning and working between commissioners and providers, professional groups, the third sector, people with COPD and asthma and their carers. Its success will also depend on clinical leadership and engagement to develop local ownership and a shared sense of purpose. Professor Sue Hill and Dr Robert Winter Joint National Clinical Directors for Respiratory Disease 7

8 Chronic Obstructive Pulmonary Disease (COPD) COPD is a disease of the lungs that is characterised by airflow obstruction or limitation. It is now the most widely used term by clinicians for the conditions in people with airflow obstruction who were previously diagnosed as having chronic bronchitis or emphysema or chronic unremitting asthma. The airflow obstruction is usually progressive, not fully reversible (unlike asthma) and does not change markedly over several months. It is treatable, but not curable; early diagnosis and treatment can markedly slow decline in lung function and hence lengthen the period in which someone can enjoy an active life. Asthma Asthma is a long-term condition that affects the airways in the lungs. Classic symptoms include breathlessness, tightness in the chest, coughing and wheezing. The goal of treatment is for people to be free of symptoms and able to lead a normal, active life. This is not a condition involving gradual deterioration over time, so the aim is to achieve freedom from symptoms in as many people as possible. The causes of asthma are not well understood, so prevention of asthma is not currently possible. People with asthma have different triggers for symptoms, and need to get to know what will provoke their asthma and cause deterioration in their control. 8

9 Why does the NHS need to act to improve quality and outcomes for people with COPD and asthma? One person dies from COPD every 20 minutes in England - around 23,000 deaths a year. If the whole NHS were to deliver services in line with the best around 7,500 lives could be saved Death rates from COPD are almost double the EU average. 15% of those admitted to hospital with COPD die within three months and around 25% die within a year of admission One in eight people over 35 has COPD that has not been properly identified or diagnosed, and over 15% are only diagnosed when they present to hospital as a emergency COPD is the second most common cause of emergency admissions to hospital and one of the most costly inpatient conditions to be treated by the NHS. There is a four-fold variation in non-elective admissions across England, and readmission rates vary by up to five times in different parts of the country. 80% of people with COPD have at least one other long-term condition. COPD is linked with an increased risk of mortality from cardiovascular disease, and having depression and/or an anxiety disorder COPD Over 50% of people currently diagnosed with COPD are under 65 years of age 24 million working days are lost each year from COPD with 3.8 billion lost through reduced productivity There are around 1,000 deaths from asthma a year in the UK, the majority of which are preventable The UK has the highest prevalence of asthma in the world, at around 9-10% of adults Asthma costs the NHS an estimated 1 billion a year It is estimated that around 80% of spending on treating those with asthma is spent on the 20% with the severest symptoms ASTHMA There is a 6 fold variation in admission rates across England for adults with asthma Many people with asthma are not achieving freedom from symptoms, with a recent large scale survey reporting that around 35% of adults with asthma had had an asthma attack in the previous 12 months 9

10 Introduction What can the NHS do to improve quality and outcomes for people with COPD and asthma? 1. The NHS is aspiring to excellence and the best possible outcomes for people in a future which is patient-centred, clinically-led and focussed on the needs of the local population. 2. For COPD and asthma, this means the NHS working together with the public health and social care systems to meet the six objectives that were set out in the Outcomes Strategy for COPD and Asthma published in July Box 1: Outcomes Strategy for COPD and Asthma objectives 1 - To improve the respiratory health and well-being of all communities and minimise inequalities between communities 2 - To reduce the number of people who develop COPD by ensuring they are aware of the importance of good lung health and well-being, with risk factors understood, avoided or minimised, and proactively address health inequalities 3 - To reduce the number of people with COPD who die prematurely through a proactive approach to early identification, diagnosis and intervention, and proactive care and management at all stages of the disease, with a particular focus on the disadvantaged groups and areas of prevalence 4 - To enhance quality of life for people with COPD, across all social groups, with a positive, enabling, experience of care and support right through to the end of life 5 - To ensure that people with COPD, across all social groups, receive safe and effective care, which minimises progression, enhances recovery and promotes independence 6 - To ensure that people with asthma, across all social groups, are free of symptoms because of prompt and accurate diagnosis, shared decision making regarding treatment, and on-going support as they self manage their own condition to reduce the need for unscheduled health care and risk of death 3. The Outcomes Strategy for COPD and Asthma recognises that these conditions are national priority clinical areas, and that joint working is needed from prevention right through to the end of life. To achieve this, good, strong working relationships are essential - not only within the NHS (between primary, secondary and community care) but also between the NHS and other partners like the public health system, local government and social care, the private sector and voluntary organisations. As a key example, the indicator on mortality from respiratory disease in people under 75 is 10

11 shared by both the NHS and the Public Health Outcomes Frameworks - both services will need to work together to achieve improved outcomes in this area. 4. This NHS Companion Document describes the actions and interventions the NHS specifically can take to help achieve the outcomes relevant to the NHS set out in the Outcomes Strategy. 5. The NHS Companion Document is not mandatory, but rather describes best practice in achieving improved outcomes. It should support the work already started by the NHS in response to the NHS Operating Frameworks 2011/12 and 2012/13, which called on the NHS to implement the recommendations in the Consultation on a Strategy for Services for COPD in England 1 and the Outcomes Strategy for COPD and Asthma 2 respectively. 6. It should also complement work being undertaken to meet the National Institute for Health and Clinical Excellence (NICE) Quality Standard for COPD, published in The NICE Quality Standard statements describe high quality management and treatment of diagnosed COPD for the parts of the care pathway where evidence was available to meet NICE criteria. These are reflected and drawn upon throughout this document. Box 2: NICE Quality Standard for COPD 1 People with COPD have one or more indicative symptoms recorded, and have the diagnosis confirmed by post-bronchodilator spirometry carried out on calibrated equipment by healthcare professionals competent in its performance and interpretation 2 People with COPD have a current individualised comprehensive management plan, which includes high-quality information and educational material about the condition and its management, relevant to the stage of disease 3 People with COPD are offered inhaled and oral therapies, in accordance with NICE guidance, as part of an individualised comprehensive management plan 4 People with COPD have a comprehensive clinical and psychosocial assessment, at least once a year or more frequently if indicated, which includes degree of breathlessness, frequency of exacerbations, validated measures of health status and prognosis, presence of hypoxaemia and comorbidities 5 People with COPD who smoke are regularly encouraged to stop and are offered the full range of evidence-based smoking cessation support 6 People with COPD meeting appropriate criteria are offered an effective, timely and accessible multidisciplinary pulmonary rehabilitation programme 7 People who have had an exacerbation of COPD are provided with individualised written advice on early recognition of future exacerbations, management strategies (including appropriate provision of antibiotics and corticosteroids for self-treatment at home) and a named contact 11

12 8 People with COPD potentially requiring long-term oxygen therapy are assessed in accordance with NICE guidance by a specialist oxygen service 9 People with COPD receiving long-term oxygen therapy are reviewed in accordance with NICE guidance, at least annually, by a specialist oxygen service 10 People with admitted to hospital with an exacerbation of COPD are cared for by a respiratory team, and have access to a specialist early supported-discharge scheme with appropriate community support 11 People admitted to hospital with an exacerbation of COPD and with persistant acidotic ventilator failure are promptly assessed for, and receive, non-invasive ventilation delivered by appropriately trained staff in a dedicated setting 12 People admitted to hospital with an exacerbation of COPD are reviewed within 2 weeks of discharge 13 People with advanced COPD, and their carers, are identified and offered palliative care that addresses physical, social and emotional needs 7. This document is intended as guidance to support commissioners and providers during the current transitional period, prior to the NHS Commissioning Board (NHSCB) and clinical commissioning groups (CCGs) taking on their commissioning responsibilities from April 2013 onwards. The NHSCB may choose to publish its own guidance in due course to reflect these new commissioning arrangements. 8. This document is intended to be useful for all involved in improving quality and outcomes in the NHS for people with COPD and asthma clinicians, commissioners, providers, and people with those conditions and their carers. How the Companion Document fits with national strategy 9. The NHS Companion Document is intended to describe for the NHS what it specifically can do to help meet the objectives in the Outcomes Strategy for COPD and Asthma, to address the whole care pathway for people with COPD and asthma. 10. In the new NHS architecture, the NHS Outcomes Framework will be used to provide a national-level overview of how well the NHS is performing, to act as an accountability mechanism between the Secretary of State and the NHSCB, and as a catalyst for quality improvement through the NHS. It is structured around five domains, which set out the high-level national outcomes that the NHS should be aiming to improve. 11. For clarity for the NHS in how the objectives in the Outcomes Strategy for COPD and Asthma link to the NHS Outcomes Framework, this Companion Document is also structured according to the five domains. 12. Chapter 2 goes through each of the five domains for COPD and Chapter 3 does the same for asthma. The indicators from the NHS Outcomes Framework relevant to COPD and asthma are given for each domain, and the actions and interventions described under it show how the NHS can make improvements in outcomes in that 12

13 area. The objectives from the Outcomes Strategy for COPD and Asthma are clearly linked to the domains they are relevant to. i 13. For COPD, the actions and interventions under each domain draw on the NICE Quality Standard statements and the NICE clinical guideline for COPD. For asthma, although the NICE Quality Standard is still in development, evidence-based best practice guidelines are also drawn upon. 14. The diagram below shows how the different documents fit together. NICE Quality Standards Support for implementation of the Outcomes Strategy for COPD and Asthma and the NHS Companion Document 15. Until April 2013, there is support for implementation of the Outcomes Strategy for COPD and Asthma and the NHS Companion Document from the joint National Clinical Directors (NCDs), NHS Improvement ii, the respiratory leads appointed to each Strategic Health Authority (now cluster) iii, and the local respiratory networks that have been established. i Objectives 3 6 from An Outcomes Strategy for COPD and Asthma are drawn upon in this Companion Document as they are specifically relevant to the NHS. Objectives 1 2 are primarily relevant to Public Health. ii iii 13

14 16. The Department and NCDs will work with the respiratory leads to consider how they can best align themselves with the new structures and arrangements during transition to the NHSCB and the new commissioning system. Additionally the Department will work with partner organisations such as the British Thoracic Society (BTS), Primary Care Respiratory Society UK (PCRS-UK), British Lung Foundation (BLF) and Asthma UK and involve them in innovation and improvement, delivery and the provision of expert knowledge, advice and clinical leadership. 17. Assessing progress on delivery of this strategy during transition and beyond will be important. As agreed with the respiratory leads locally, they will each publish an annual report at the end of 2012/13 to measure progress on implementation and on improving outcomes so far. The establishment of a national dataset for respiratory disease (INHALE), in conjunction with NHS East of England, will, together with the geographical lead reports, enable national progress reports to be developed. iv 18. When the NHS Commissioning Board is in place, it may wish to review the arrangements of support for implementation of the Outcomes Strategy for COPD and Asthma post April The Companion Document will be supported by a COPD Commissioning Toolkit, which will be published shortly. This will set out service specifications and standard contracts for various elements of the COPD care pathway, to help commissioners to commission high-quality care. Again, they will be not be mandatory, but rather describe best practice. The toolkit includes the following elements of the care pathway: Improving diagnosis - spirometry and clinical assessment; Pulmonary rehabilitation; Managing acute exacerbations; and Home oxygen assessment and review services. 20. Other tools to support implementation of the Outcomes Strategy for COPD and Asthma include: A Good Practice Guidance for Home Oxygen (published April 2011 by Primary Care Commissioning) v A Good Practice Guide for Adults with Asthma (to be published Spring 2012 by Primary Care Commissioning) A Good Practice Guide for Children with Asthma (to be published Summer 2012 by Primary Care Commissioning) iv v 14

15 Future commissioning responsibilities 21. From April 2013, responsibility for commissioning will be handed to clinical commissioning groups (CCGs). CCGs will be well placed to commission health services to meet the real needs of people for whom they are responsible. Through these groups, clinicians will have new opportunities to shape the way that health services are designed and delivered. Taking into account the increasing range of NICE Quality Standards and commissioning guidance, CCGs will work closely with secondary care and other healthcare professionals, and with community partners, to design joined-up services, and optimal care pathways, that make sense to patients, families and the public. 22. The consultation document Liberating the NHS: Commissioning for Patients proposed that the NHS Commissioning Board, supported by NICE, will develop a Commissioning Outcomes Framework (COF) to hold clinical commissioning groups to account and so that there is clear, publicly available information on the quality of healthcare services they commission. The consultation response Liberating the NHS: Legislative framework and next steps showed there was widespread and strong support for such a framework and the NHS Listening Exercise confirmed that there is almost universal support for making improvement in quality and healthcare outcomes the primary purpose of all NHS-funded care. 23. The COF will allow the NHS Commissioning Board to identify the contribution of CCGs to achieving the national outcome goals for health improvement in the NHS Outcomes Framework, while also being accountable to patients and local communities. It will also enable clinical commissioning groups to benchmark their performance and identify areas for improvement. 24. The COF will become operational from April 2013 as CCGs take on full responsibility for commissioning. 25. NICE held a consultation on its list of proposed indicators for the 2013/14 COF which ended on 29 February Details on the proposed indicators can be found on the NICE website at and NICE can be contacted at COF@nice.org.uk if there are any queries. The results of the consultation and further testing will be provided to their independent Advisory Committee for consideration in June. NICE will then publish their recommendations for the NHSCB to consider in Summer

16 Chapter 1: REACT a call to action 26. The Outcomes Strategy for COPD and Asthma set out six high-level objectives for the NHS, public health and social care services to improve quality and outcomes for people with COPD and asthma. The objectives span prevention, diagnosis, treatment, care and management and end of life. 27. The Outcomes Strategy brought these objectives together in a call to action to the whole health and social care system, to professionals, people with COPD and asthma, the voluntary sector and the public to REACT and change the approach to respiratory disease in England: REACT R E A C T Respiratory health and the importance of good lung health and greater awareness of the symptoms of respiratory disease Early, accurate diagnosis and assessment of severity to ensure late diagnosis is minimised, risks are reduced through better-informed people, effective interventions can begin and late diagnosis is minimised Active partnership between healthcare professionals and people with COPD to be partners in care, to self manage their condition and to exercise choice in the treatment they receive and where it is delivered Chronic disease management and proactive management of all disease severities and any co-morbid conditions and responsive episodic care provided around the needs of the patient Tailored evidence-based treatment for the individual and the evidence-based use of all pharmacological and non-pharmacological interventions to individual choice and benefit and linked to regular review 28. This document uses the five domains of the NHS Outcomes Framework to describe what action the NHS can specifically take to help meet those objectives and REACT to improve the lives of people with COPD and asthma. The document clearly shows which are the relevant indicators for COPD and for asthma in each domain of the NHS Outcomes Framework, and describes the key interventions and actions that commissioners and providers can do to improve outcomes in that area. 29. For clarity, each activity or intervention is listed under only one domain, but naturally may impact on the outcomes in any or all of the other domains as well, since in reality they do not exist in isolation. It is important that a whole pathway approach to COPD and asthma care is taken and adopted locally by commissioners and providers if they want to see real improvements made to the quality of services and the impact that has on the lives of people with COPD and asthma. 30. A summary of the actions and interventions described in the following chapters is given in Annex C. 16

17 Chapter 2: Improving quality and outcomes for people with COPD DOMAIN ONE: Preventing people from dying prematurely 31. COPD is an umbrella term and includes chronic bronchitis, emphysema and chronic unremitting asthma, which can all co-exist in some people with the disease. It is associated with lung tissue damage and airflow obstruction which leads to the symptoms of breathlessness, reduced exercise tolerance and the production of excess mucus. Significant lung damage may be present before, for example, airflow obstruction is detected or symptoms such as cough and breathlessness are reported. 32. The onset of the disease is insidious as people often fail to recognise the symptoms and are therefore diagnosed late, when their COPD has advanced from mild disease and become more moderate or severe in nature. COPD is a progressive disorder - the lung damage cannot be reversed but treatment early on in the disease can halt or slow it down, and treatment later on in the disease can delay the onset of disability and prolong survival. 33. As COPD progresses and becomes advanced other complications may arise such as respiratory failure, which requires interventions such as long term oxygen therapy to prolong survival and improve quality of life. 34. The NHS Outcomes Framework has a specific indicator in Domain One to reduce respiratory mortality in the under 75s. This indicator is also shared with the Public Health Outcomes Framework (see Chapter 4). There is well-established evidence that shows that healthcare interventions reduce mortality in COPD. However, the NHS Atlas of Variation and other data show us that: 3 Care is variable; There is a focus on treating the more severe end of the disease, rather than mild or moderate disease. This is reflected in the focus of the guidelines for evidence-based treatment and intervention; Emerging information from global clinical trials is not always implemented. 35. There are three main approaches that the NHS can take to prevent people dying prematurely: i. Diagnose earlier and accurately - ensuring that people have the right diagnosis, and receive appropriate treatment ii. Prevent progression - through evidence-based treatment, prompt and effective management of exacerbations, and interventions such as smoking cessation iii. Prolong survival - ensuring that people with more severe COPD receive interventions such as non-invasive ventilation and long-term oxygen therapy 36. The table below sets out the key actions and interventions the NHS can do to ensure these steps are taken, so that premature deaths from COPD are prevented. 17

18 Why does the NHS need to act? What can the NHS do to improve outcomes? DOMAIN ONE: Preventing people from dying prematurely NHS Outcomes Framework Outcomes Strategy for COPD and Asthma NICE Quality Standard for COPD Diagnose earlier and accurately 2.1m people are living with undiagnosed COPD an estimated 70% of the total number of people with COPD 10% of acute admissions for COPD are in people without a prior diagnosis of the condition. Most of these have severe disease and some are in respiratory failure Over 25% of people with a diagnostic label of COPD have been wrongly diagnosed, usually associated with poorly-performed spirometry Patients who have COPD and have smoked have a higher incidence of lung cancer and cardiovascular disease Identify people whose treatment history and symptoms suggest that COPD may have been missed, and those currently diagnosed with COPD without a clear diagnosis Perform quality-assured diagnostic spirometry on those identified and confirm diagnosis, together with other investigations to assess severity and coexistence of other conditions Assess for the presence of alpha- 1-antitrypsin deficiency and for bronchiectasis in patients with a suggestive history Recognise the link between COPD and lung cancer and explore the use of proactive strategies to diagnose earlier Life expectancy at 75 i males ii females Under 75 mortality rate from respiratory disease Objective 3: To reduce the number of people with COPD who die prematurely through a proactive approach to early identification, diagnosis and intervention Statements 1, 3, 5, 7, 8, 9, 10, 11 Prevent progression It costs the NHS nearly ten times more to treat severe COPD than mild disease The rate of lung function decline is faster in the earlier stages of the disease which can be modified by treatment Quitting smoking when COPD symptoms are moderate leads to a decline in symptoms similar to that of healthy never smokers and a reduction in cough, phlegm and wheeze in most individuals within the first year Exacerbations are common in COPD and if not treated promptly and appropriately lead to further lung damage and lung function decline Ensure people with COPD receive evidence-based treatment Offer appropriate smoking cessation support to people with COPD who smoke Identify and treat exacerbations promptly Prolong survival If all PCTs performed as well as the top 25% on COPD treatment and care, 7,800 lives would be saved in England each year Regular moderate or high physical activity reduces mortality and prolongs survival When non-invasive ventilation (NIV) is used in appropriate people, survival is almost doubled Long-term oxygen therapy can improve survival rates by around 40%. However around 30% of people currently prescribed oxygen either do not benefit clinically, or do not use the oxygen Promote regular physical activity in all people with COPD Identify those who may need NIV both in the acute setting and as a long-term domiciliary treatment, and ensure structured assessment of need for NIV is carried out by a respiratory specialist Ensure routine pulse oximetry is performed in people with COPD whose FEV1 is lower than 50% predicted to identify those who may need long-term home oxygen therapy and, for those identified, ensure structured assessment of need by a home oxygen assessment and review service 18

19 37. More background and detail on the actions and interventions in Domain One is given below. Diagnose earlier and accurately What the NHS can do to improve outcomes: Identify people whose treatment history and symptoms suggest that COPD may have been missed, and those currently diagnosed with COPD without a clear diagnosis Perform quality-assured diagnostic spirometry on those identified and confirm diagnosis, together with other investigations to assess severity and coexistence of other conditions Assess for the presence of alpha-1-antitrypsin deficiency and for bronchiectasis in patients with a suggestive history Recognise the link between COPD and lung cancer and explore the use of proactive strategies to diagnose earlier Why? 38. There are over 2.1 million people in England living with undiagnosed COPD, significantly more than the 900,000 who have been diagnosed. 39. Of the undiagnosed population, the majority have mild or moderate disease, but a significant minority have severe COPD. Late or under diagnosis has been shown to have a strong association at practice level with hospital admission for exacerbations. If people remain undiagnosed until they are severely disabled by the condition, or are admitted to hospital as an emergency, the benefits of treatment to the individual are greatly reduced and the costs to the healthcare system greatly increased. 40. If diagnosed earlier, people with COPD can take steps to improve the outcome of their disease and prevent its progression, and healthcare providers can focus on helping people to remain well. Evidence from recent global clinical trials shows that the rate of decline in lung function is faster in the earlier stages of the disease - where people are less likely to have a diagnosis - contrary to previous clinical opinion Undiagnosed people with moderate or severe COPD have high healthcare costs in the two years before diagnosis. 10 Many people also present with symptoms of COPD for between at least two and 10 years before a diagnosis is made. 11 Preventing people dying prematurely requires a proactive and systematic approach to earlier and more accurate diagnosis. 42. It is important that the diagnosis made is accurate and confirmed through qualityassured spirometry and other lung function tests to assess severity and functional ability. Differentiation between COPD and asthma and other lung diseases is essential. An assessment for the presence of bronchiectasis in patients with excess sputum production and difficult-to-treat respiratory exacerbations, is also important. 43. Most, but not all COPD, is caused by cigarette smoking, as are many other diseases, such as cardiovascular disease. These diseases therefore may co-exist in someone with COPD and it is important for treatment and disease progression that this is properly 19

20 recognised and assessed. This is particularly true in lung cancer where up to 65% of people with lung cancer also have COPD. 44. Ultimately, earlier and accurate diagnosis would reduce the numbers of deaths from COPD, help to prevent progression of the disease, prolong survival and improve quality of life of those diagnosed. Identify people whose treatment history and symptoms suggest that COPD may have been missed, and those currently diagnosed with COPD without a clear diagnosis 45. It is important that COPD is recognised within the community in a cost-effective and efficient manner. There is also a need to ensure that addressing any COPD underdiagnosis does not increase the burden of COPD misdiagnoses, so it is important that those currently diagnosed with COPD and/or on COPD medication without a clear or accurate diagnosis are also identified. 46. Targeted case-finding can be done through auditing GP registers to identify people whose treatment history and symptoms suggest a diagnosis that COPD may have been missed or that COPD has been incorrectly diagnosed. NICE recommends that a diagnosis of COPD should be considered in people over the age of 35 who have a risk factor (generally smoking) and who present with exertional breathlessness, chronic cough, regular sputum production, frequent winter bronchitis or wheeze In order to identify adults with early signs of COPD, there needs to be more use of symptom questionnaires, microspirometry or other measurements as case finding tools. As there is insufficient evidence at present to support the use of these tools, the Department of Health has commissioned a study to examine their effectiveness and cost effectiveness of approaches to case finding before issuing further guidance to the NHS see box below. Box 3: Case finding programme A case finding approach is being piloted in which individuals are selected for quality-assured diagnostic spirometry on the basis of age, smoking status, symptoms and micro-spirometry. This does not diagnose COPD but helps to rule out those individuals with a low probability of having COPD. The study population consists of current smokers (aged 35 years or older) registered with practices in York and Hull. Individuals are excluded if they have a cognitive or physical condition that precludes them from completing the questionnaires or undergoing lung function testing. A number of case finding tools are being tested: Symptoms and symptom-based questionnaires Case finding micro-spirometry Peak flow measurement and wheeze measurement The study is expected to report in late

21 Box 4: British Lung Foundation awareness raising campaigns The British Lung Foundation has run campaigns aimed at raising awareness of good lung health and to encourage the early diagnosis of COPD in conjunction with six Primary Care Trusts in England. In NHS Hull they ran a campaign in September 2010 to: Increase demand for lung function testing in primary care in Hull Identify those with likely undetected COPD by lung function testing in the community for at risk groups Provide COPD information to at risk groups The following elements combined to provide a fully integrated awareness-raising campaign: Pre-campaign communication with health care outlets to engage support Provision and distribution of COPD campaign materials (posters/leaflets/beer mats) to GP surgeries, pharmacies, health centres, libraries and other venues. NHS Hull were responsible for the local media campaign Awareness stands with free lung testing in targeted community settings The total number of people tested was % of people tested were referred to GP with abnormal lung function Perform quality-assured diagnostic spirometry on those identified and confirm diagnosis, together with other investigations to assess severity and coexistence of other conditions 48. Making a diagnosis of COPD relies on clinical judgement, based on a confirmation of history, physical examination and confirmation of the presence of airflow obstruction using quality-assured diagnostic spirometry. Spirometry is also critical for evaluating the influence of some co-morbid conditions and in assessing the severity of the disease. 49. Spirometry is the test that measures exhaled volume and/or flow against time from a maximum intake of breath. It can detect the presence of airflow obstruction in the lung, as well as the degree of reversibility achieved with bronchodilator treatment. 50. However, because of poor quality spirometry, many people are diagnosed as suffering from COPD when they actually have another condition. It is important therefore that quality-assured spirometry that meets national and international guidelines and standards is commissioned and provided so that the results are quality assured and clinically interpreted correctly. The Department of Health will include reference to these guidelines, and specifications for achieving accurate spirometric data, within a guidance document for the NHS to be published alongside the COPD Commissioning Toolkit (which includes a section on diagnosis). 21

22 51. There will be several benefits in improving quality-assured confirmatory diagnoses. Failing to perform accurate spirometry can overestimate the prevalence and severity of COPD and thus lead to wasted resources in treating people who do not actually have the disease, or a milder form of it. A survey of practices across Devon revealed that 27% of people on GP COPD registers did not meet the diagnostic criteria for COPD It is important that people not only get an accurate, quality-assured diagnosis, but that there is clear differentiation of COPD from asthma and other diseases. This differentiation is critical if there is to be appropriate intervention and management of the condition, the natural course of the disease in an individual is to be modified and the more cost-effective treatment is to be provided. The main differences between COPD and asthma are set out clearly in Annex B. 53. Overlooking the possibility of reversible disease can result in significant unnecessary morbidity, and so tests to assess the degree of reversibility of airway obstruction are important before a definitive diagnosis of COPD is made. 54. Spirometry is not the only diagnostic test that may be required at the initial diagnosis stage to ensure that the disease and its impact are physiologically fully characterised in an individual and severity is established. For example, the presence of emphysema is not reflected in spirometric measurements and is likely to have a greater impact on measures of gas transfer. Investigations such as radiology using HRCT and a measure of gas transfer or of exercise tolerance may be more informative in the assessment and monitoring of some individuals For those with coexistent heart failure, an assessment of both the lung and cardiac contribution to breathlessness will need to be established through the use of both spirometry and more extensive lung function tests and echocardiography. As a result, it is important that access to these tests is readily available for a comprehensive evaluation at the point of initial diagnosis. 56. Diagnostic testing and the services that provide them are subject to Care Quality Commission (CQC) regulatory arrangements. To help providers maintain the quality of their diagnostic services and provide evidence to the CQC, an accreditation programme for respiratory diagnostic testing is being introduced during 2012 as part of the Improving Quality in Physiology Diagnostics (IQIPS) programme. vi Although participation in the programme is not mandatory, by taking part providers will help to ensure that people with COPD are accurately diagnosed and receive the correct treatment. Reference will be made to the accreditation process for respiratory diagnostics in the COPD Commissioning Toolkit so that it can be built into any commissioning specifications and contract arrangements, in line with best practice. 57. It is very common for people with COPD to have additional long-term conditions. Around 33% have hypertension, 19% have coronary heart disease, 18% have depression, 11% have diabetes and 6% have heart failure. It is important that access to appropriate tests is readily available for a comprehensive evaluation at the point of initial diagnosis, and that there are locally-agreed pathways for referral for treatment of other conditions. vi Improving Quality in Physiological diagnostic Services (IQIPS) is a programme hosted by the Accreditation Unit of the Royal College of Physicians with support from the Department of Health. 22

23 Assess for the presence of alpha-1-antitrypsin deficiency and for bronchiectasis in patients with a suggestive history 58. At the diagnosis stage, it is also important that arrangements are in place for assessment of alpha-1-antitrypsin deficiency, which can lead to early onset emphysema and premature death. Alpha-1-antitrypsin is an enzyme inhibitor secreted by the liver to protect the lungs from permanent damage. Low levels in the circulation are associated with the development of early onset emphysema and therefore phenotyping and genotyping for those individuals with low circulating levels needs to be provided. Smoking can exacerbate the effect of the low level of inhibitor and lead to severe COPD in young to middle-aged adults. 59. The early detection of alpha-1-antitrypsin deficiency results in increased awareness of the dangers of smoking and environmental pollution The World Health Organisation (WHO) have recommended that all people with a diagnosis of COPD and/or a history of adult onset asthma should be assessed for alpha-1-antitrypsin deficiency. 16 Following assessment of individuals for alpha-1- antitrypsin, those identified would have their lung disease assessed more closely and receive appropriate genetic counselling, and their relatives would be offered assessment. 61. Some patients with COPD will also develop bronchiectasis, which will range from mild to more severe forms of the disease requiring more complex treatment usually in specialist centres. The BTS has produced best practice guidelines for the assessment and treatment of bronchiectasis which commissioners and providers can refer to. 17 Recognise the link between COPD and lung cancer and explore the use of proactive strategies to diagnose earlier 62. As well as being a major cause of COPD, cigarette smoking is the main preventable cause of lung cancer. Many studies have also found evidence of a substantially increased risk of lung cancer in people with COPD independent of smoking (twice as common in men and four times as common in women). The estimated prevalence of COPD in people with lung cancer has been shown to be between 50 and 65%. While the three-year survival from diagnosis of lung cancer is already very low, it is considerably lower in those with a prior COPD diagnosis. Lung cancer is more common in people aged 65 and older and among those with a prior diagnosis of COPD, lung cancer is diagnosed at an even later age. 63. The Department of Health National Awareness and Early Diagnosis Initiative (NAEDI) currently includes a national campaign to raise public awareness of the symptoms of lung cancer and encourage early presentation to the GP. 64. Locally, proactive strategies to recognise the co-existence and to improve the diagnosis of both conditions could be explored. 23

24 Prevent progression What the NHS can do to improve outcomes: Ensure people with COPD receive evidence-based treatment Offer appropriate smoking cessation support to people with COPD who smoke Identify and treat exacerbations promptly Ensure people with COPD receive evidence-based treatment 65. Evidence-based treatment recommendations for people with COPD form a central part of the NICE clinical guideline for COPD. 18 All people with COPD should receive treatment in accordance with this guideline, which is based on presenting symptoms, and a partnership approach between the person with COPD and their healthcare professionals. In all cases of COPD (irrespective of severity), treatment should be optimised to control and/or minimise symptoms to ensure that people living with the disease can play an active part in everyday life (as outlined in paragraphs in Domain Two). Offer appropriate smoking cessation support to people with COPD who smoke 66. The health gains achieved by stopping smoking are indisputable. For COPD, stopping smoking is of proven benefit in terms of interfering with disease progression and should be recognised as a treatment, not just as a way of preventing disease. Stopping smoking also benefits other conditions such as cancer, cardiovascular disease, diabetes and osteoporosis. Stop smoking services should offer a long-term programme that is flexible enough to deal with an individual s needs. It can take as many as seven or eight attempts for a smoker to quit, therefore programmes need to consider this and have robust systems to follow up those that have used the service and offer further help if needed. 67. It is important that there is access to behavioural support and recommended stop smoking pharmacotherapies (e.g. Nicotine Replacement Therapy including combination therapy, varenicline and bupropion) that greatly increase the chances of stopping smoking. 68. Evidence-based stop smoking interventions, which combine behavioural support and pharmacotherapy, offer the best chance of stopping smoking, and therefore avoid or significantly reduce the impact of lung disease. NHS Stop Smoking Services are available throughout the country offering free stop smoking support to all smokers through a range of interventions and a variety of access points. 69. Stop smoking services should also take into account other smoked substances that may have an impact on lung health, such as cannabis. Links could be made with local drug teams to address this issue. Identify and treat exacerbations promptly 70. Even when a diagnosis is made, and if proactive care measures are in place, it is inevitable that a proportion of people with COPD will experience episodes of acute 24

25 exacerbations. COPD exacerbations are associated with worse quality of life, faster disease progression and increased mortality. 71. There is good evidence that prompt therapy in exacerbations results in less lung damage, faster recovery and fewer admissions (and subsequent readmissions) to hospital. People should be able to access clinical help early in the course of an exacerbation and, as recommended in the NICE clinical guideline for COPD, should be given a course of antibiotic and corticosteroid tablets to keep at home for use as part of a self-management strategy Some people with COPD are prone to frequent exacerbations, defined as requiring two or more courses of antibiotics and/or corticosteroids in a 12-month period. Prompt treatment at the onset of exacerbation symptoms has been shown to improve outcomes. 20 Thus it is important that people who develop exacerbations, together with their carers, are able to understand and recognise exacerbation symptoms. As outlined in the Outcomes Strategy for COPD and Asthma, options and emerging good practice models for access to 24-hour advice for people will be investigated as part of the NHS Improvement Lung work programme so that people receive optimal information and advice about their worsening symptoms and exacerbations. It is important that locally there is a pathway of care which is proactive and supports people with COPD and their carers to identify symptoms earlier. 73. Some exacerbations may be mild and self-limiting and only require an increase in regular inhaled medication. However people with more severe exacerbations will require access to specialist care to undergo investigations such as measurement of arterial blood gases, chest radiograph to exclude pneumonia, and assessment of therapeutic requirements including for example intraveneous antibiotics. The severity of an exacerbation is also affected by other pre-existing conditions (co-morbidities) or complications that are commonly found in this group and need to be both recognised and investigated. 21 A severe exacerbation has one or more of the following features: The presence of respiratory failure The presence of pneumonia The presence of co-morbidities requiring active intervention Failure of first line therapy 74. Whilst many COPD exacerbations can be assessed and managed in the community, specialist advice, care and investigations will need to be available to many people with moderate to severe disease during exacerbations. Commissioners and providers may find it useful to look at the emerging findings from the work of the NHS Improvement Lung programme and other evidence-based practice such as that available on the Improving and Integrating Respiratory Services in the NHS initiative (IMPRESS) website, which have been evaluated for their impact on reducing hospital admissions or readmissions. The COPD Commissioning Toolkit the Department of Health will be publishing shortly will also have a section on managing acute exacerbations. 25

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